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gregs_seizures

Controlling seizures without medication

I hope that this does not turn out to be a controversial subject. 

Let me just start by saying that I don't know what kind of seizure disorder I have.  I have had only 3 EEGs between the time I was 19 and now 35.

After the first EEG, my doctor told me I had epilepsy and put me on Tegretol.  I took the medication only for a year, and then moved over to Klonopin, which I have taken ever since.  When I was 22, I had another EEG, and the doctor told me I was fine. I was living overseas at the time of my 2nd EEG and I really can't vouch for the expertise of the doctor.

Despite what the doctor told me of my EEG, my seizures continued and had never stopped.

The seizures I was having were incredibly breif lasting only a second or two.  My eyes would roll back into my head, I would NOT fall to the ground.  I'd lose muscle control from the neck and above, and kind of twitch my head back and forth with very small jerks that were almost unnoticeable.

In any event, I was sick with the flu recently, and during my doctor's visit, I had one of these seizures, and he insisted I see a nuerologist again.

I had an EEG and MRI, and I've been told again that I have a seizure disorder.  I just started taking Lamictal.

I'm very keen to how my body responds to foods, stress, and specific situations.  

If I were able to simply avoid all the situations that trigger my seizures which in most cases are stress-induced,  I believe that I could live seizure-free without medication.

But that is not possible.  What IS possible - is for me to overcome the situations that trigger my seizures with a different mental outlook. Although I have not been able to successfully change my mental approach to the situations that cause my seizures all the time,  I have had success in many instances. 

To sum it up, I strongly believe that it would be possible to take control of my seizure disorder through a non-medicated approach. Perhaps my seizures are just different.  I don't even know at this point what kind of seizures I have.  All I know is that both of my EEGs in the US showed with certainty that I have a seizure disorder. I have left a message with my doctor today, to get more information on his diagnosis, and will post it here when I receive that information (see below).

I will continue taking my Lamictal.  What I want to know is if anybody agrees that it could be possible to correct a form of seizures with a non-medicated mental approach; any doctors or patients?

I am not a scientologist.  In fact, I'm not even sure what their approach to a seizure disorder is.  I am just stating what I think I have the power to do, and want to find out if anybody shares those ideas.

 

Update

I spoke with my doctor today.  The seizures that I have been having are simple and complex focal seizures.  

Comments

Re: Controlling seizures without medication

I don't have any advice but I am interested in any responses.  Someone must have something besides smoking marijuana.  C'mon someone reading this will eventually come out of the shadows and offer a nibble.

Re: Controlling seizures without medication

Hi
I am caught in the middle of this theory. I am 38 y/I female. I've been exploring the possibility of controlling seizure's by eliminating toxins in my body. I would discourage other's into trying to do this except to enhance their basic health. Dr. Richard blaylock (neurosurgeon) suggest's that our diet is the key role in causing most seizure's. He say's that excitotoxin's such as MSG's increase electrical activity in the brain. Other cause's include enviornmental pollution, heavy metal toxin's is. Flouride, alumininam,mercury,lead to name a few. Mineral/vitami
Defencies. All these thing's and much more could lead to hormonal and other changes in the brain. I have made all
These change's in conjunction to my add's and have been seizure free for 14 month's. I want to eliminate my mess but, i'm just too scared. My neuro discorage's me from getting off med's and think's ...my med's are the true successor. And, he may be right and he may be wrong. I haven't decided yet. What do you think?

Re: Controlling seizures without medication

Hi,

Thanks all for sharing your information. I have TLE and been suffering petit mal seizures since I was a kid, but after tests around late teens I was put on Tegretol. Now I'm 30, on Depakene after trying almost all medications, and back to square 1.

To be honest, I feel that the only person who can take care of my case is myself and other people with epilepsy by sharing experiences, and not any doctor. I've been to many doctors, but I think being a doctor knowing all the theory is quite different from being a person who's living with epilepsy.

The last couple of doctors I've been to (based on their name and reputation), made me feel just like a guinea pig, and nothing more. One was trying different meds to see which ones work, and got me poisoned. I was actually seeing double and felt like the world was rolling backwards every time I took the meds. The other...he just never listened to what I would say, and would just add more drugs and increase the dosage!

Anyways...what was best for me to control seizures and feel healthy:

  1. Stress free life -  I got my worst seizure after being extremely stressed out at work
  2. Exercise - even if light exercise to keep the blood flowing and feeling healthy
  3. Healthy diet - Drink enough water especially when I wake up, make sure no poisons or additives are in my diet like MSG, aspartame and food additives/colours, no foods that trigger attacks such as red meat, caffeine, chocolate aubergine, tea/coffee and canned food. The best thing I found for myself is to monitor my diet and pay attention to what triggers my attacks. I'm currently living without any supplements or vitamins.

Right now, I don't have a doctor since the one I went to last left the country (the Dr. who put me on Depakene). But what I would like to do is to control attacks without living on medications, especially those with nasty side effects.

I hope the above was of any help. I would be really grateful if you can share any details regarding supplements and vitamins.

All the best.

L.

Re: Controlling seizures without medication

 I agree with everything you said labush.  I have had the most success it seems by living a healthy stress-free life.

I started on Tegretol when I was 19.  But later moved to Klonopin.  Now that the seizures have picked up again, I am on Lamictal. I am 35 now.

I will continue to take whatever medication the doctor suggests.  But I think if it is possible to defeat the problem while off medication, it should also be possible to defeat the problem the same way while on medication.

 Probably the biggest mistake for me would be to give up on the ways I feel I have had the most success, and surrender to the possibility that the mediacation will handle it for me.  

I am only on the third week of Lamictal and until I am into week 5, I will not be taking the full dosage that the doctor has prescribed.  At this point, I am still having seizures.  I do hope that the medication will stop the seizures, but I don't want to be reliant on JUST the medication either.

I do believe there are other ways to handle this problem.  I am proof of that.  I have "felt" where I need to be in regards to my mental state, in order to stop the seizures.  The only problem is that it is difficult for me to be there all the time.  I have not mastered control of that mentatlity.

 It may sound a bit crazy, but obviously after reading some other posts here, I am not alone in that thinking.

Re: Controlling seizures without medication

Lamictal is a good drug. It is usually used with another drug.  I'm taking Lamictal with Topamax and Depakote (For the time being) for my JME. The only thing I don't like about Lamictal is that you start to lose and or your hair starts thinning out! It started for me at age 20 and I'm 24!!

I'll like to find alternative treatments, diets, any route that can get me off these meds. I've been on all the meds for JME. Topamax is the most recent. Started it 2 1/2 months ago and I'm giving it a 50/50 chance of ditching it. I had a grand mal after the transition from Depakote. Thats the only reason I'm on it and it sucked getting back on it. When I got off of it, lost 15 lbs and when I got back on it, gained 10!! Got to love Depakotes side effects!! Thats one thing I can't stand and I know a lot of you guys and gals out there can't stand is some of those can't harsh side effects that effect everyday life. Topamax's side effects has been hitting me hard since I'm at college and it's been giving me problems with memory, my spelling, and my speech. At the house I get that itchy feeling in my feet but the one that scares me the most and I talk to my pharmacist about it was when I get this feeling, almost like freaking out, a hallucination, my head going a million miles a hour, sweating, and while thats going on my heart is racing. This only last a few minutes. It doesn't lead up to a seizure. The pharmacist never heard of this side effect!!!! She said if it last and doesn't go away, call the good old doc! I have more side effects I can talk about but no need for it as I had to see more doctors because of it!! Example: Urologist, not a good one to see for a 24 year old.

I know a good percentage of people are not a big fan of marijuana as a alternative treatment but I'm also considering that as an option since I live in California and for medical it is legal. MY EXPERIENCE with mj has never had any draw backs, no seizures created from smoking it. The years in high school I smoked, I had no seizures! I don't know if it help or not but who knows if it did! If Topamax doesn't cut it and that side effect doesn't go away, I may talk to my doc about it

Re: Controlling seizures without medication

MJ is like a sedative but it depends who gives it to you.  Working in a hospital setting and doing research, I have seen a lot of crazy things.  Medication for seizures have a sedating effect as alot of us know, some a lot and some not to much but it is nice to have a doctor or nurse or medical staff to depend on if there is a problem that occurs.  I personally would love to be off medication.  I am taking 3 medications and maybe my Epileptologist will start taking me off these medications but we all have to give ourselves credit on how well we take care of ourselves!

Re: Controlling seizures without medication

I would love to be seizure free w/o meds...I will watch this topic to see what people say.

All the best, Christine

Re: Controlling seizures without medication

I've quit my meds.  I quit about 2 months ago.  Not really long after I started this thread.

 I feel much better without the medicine.  I tried to explain to the doctor that my seizures were related to stress in some ways.

 Whether it is mental stress, physical stress, or other, there were triggers that I was aware of that would induce a seizure.

 He never ackowledged what I was saying.  Instead he seemed intent on disproving my claim.

I still beleive I can control this without meds, and until I have a major fit that I can't explain, I don't think I will ever go back to meds again.

 I have more clarity about my body chemistry without the extra garbage in their trying to prevent natural occurrences.  The medicine is like a dam.  It prevents the overflow, but puts a huge amount of pressure on the structure that holds the water in.

 I'm done with that.

Re: Controlling seizures without medication

Hi, unfortunately it wouldn't be an option for me to go med free as my TLE seizures occur in clusters and if I forget to take them I end up in Status.... However, I have found that decreasing my stress levels through gentle exercise and giving myself something to focus on such as writing music and poetry, has been a sufficient enough outlet to make a small difference. My partner and I are gradually making many changes in our lives to do all we can to reduce the seizures.

I'll keep an eye on this thread though, as I am interested in what people may say about it and the results you and they have with it. 

Best Wishes
Tania xx

Re: Controlling seizures without medication

I guess I am really not one to give any advice on this subject, but I will just share how it's been working for me..

 

I am a 24 year old female, and I was diagnosed with epilepsy when I was in grade 7. It's been a long time since I have seen a neurologist- I guess it just frightens me. Anyway, I seem to have 2 types, I have petit mal seizures(day dreaming spells) and tonic clonic(grand mal) seizures. My mother, also did have epilepsy. She took me for my first EEG after about 2 years of noticing these odd day dreaming spells that I would constantly have, I had the EEG and was informed that I did indeed, have epilepsy. Never ONCE did I have a tonic clonic seizure until AFTER I was diagnosed and put on Epival. It sucked, to put it frankly..I was taking 6 horse pills a day, at the same time, and I just truely felt like I hated my life(I was in grade 7). I went into a huge depression where all I would do, was sleep. I continued to have tonic clonic seizures every now and then- I also don't think I was that great with taking my meds..

To make a long story short, when I reached high school, I made the decision to stop taking my medication. I just..simply stopped, because I knew that my mother had just stopped..out of the blue, and is now seizure free.

After comin off of my medication, I had quite a few tonic clonic seizures. I was having approximately 8 a year, which to some- that is not alot at all, and I am thankful that my case is not nearly as bad as it could be. But yes, I was having 8 a year and now I am down to 2 a year. I am just a normal person my age, i dont do drugs but I have the occasional drink, I dont eat overly healthy, I do have minimal exercise, I have horrible sleep patterns and a desk job. I have come to know my warning signs, which has enabled myself and my friends and family to make sure I am out of harms way to the best of their ability. I also find that keeping myself focused, and alert helps alot as well. And also going to sleep if I do feel one coming on.

What I did, probably wasn't for the best, as I did not seek any sort of advice from my neurologist about going off of my meds. In all honesty, I was spoiled little teenage brat who wanted things done her way, and I just said "well my mom did it, and shes been seizure free for how many years now?!". I am thankful, that I don't have an overly strong case and that going off of my medication has worked for me, I am not seizure free yet, in fact I just had a tonic clonic seizure on Saturday. I am doing a lot better than I was, but that is how it worked for me. I Know most of you are older than me, but if you are considering going off of your medication, talk to your doctor and make sure everyone around you knows that you are coming off of it. I was selfish, and scared alot of people by coming off.

Good luck

Re: Controlling seizures without medication

If you call Dr. Atkin's Diet a non-medicated mental approach, it might work. It reduces, and
sometines stop, seizures in adults; it is very difficult and expensive to follow though. I
commented on it at www.epilepsy.com/discussion/982715 Officially, it's usually limited to kids.

I've also applied Skinnerian Behaviourism techniques to myself in developing schedules of reinforcement
to preclude or minimize expanding partial TLE seizures that would disrupt my speech; this worked very
well for technical and formal situations during periods of higher thresholds, with using Pavlovian
conditioning as the TLE visceral sensation "switch."

Old technical textbooks on Behaviourism from the late 50's to mid 60's seem the best to me, as the
good ones avoid the Freudian and Cognitive Theory muck. Useful and carefull textbooks don't make the
mistake of confusing "punishment" with "negative reinforcement." The effectiveness of the techniques
probably depend on which area of the brain the seizures originate from; one of the most frequent
areas is the primitive Limbic System involved with TLE. A short and popular book on behaviorism was
B. F. Skinner's "Beyond Freedom and Dignity" (1971).

I also tried variations with sensory stimulation to stop secondary tonic-clonics from strong periodic
clusters of seizures. Some reports of success from others with stimulation involve very counter-intuitive
results, esp. a 1989 article in Epilepsia, 30(2):168-174 "Sensory Stimulation for Inhibition of
Epileptic Seizures":

http://www3.interscience.wiley.com/cgi-bin/fulltext/119430454/PDFSTART

I hope this helps.

Re: Controlling seizures without medication

After having my first gran mal seizure at age 33, I was immediately put on Tegretol (after finding I was allergic to Dylantin).  After taking this for a year, I asked the neurologist if I could stop and he said it was "too early".  I took this for code that he was not going to take the rap for letting me go off of the drugs and then getting in a car accident or something - so I did it myself.  I reduced the prescription slowly.  It took over a month to go completely drug free.

I was drug free for 13 years - then I had another seizure at home - and another at work about a month later.  I'd love to be drug free again, but I love being able to drive a lot more!  So, I'm back to the drugs (now Carbitrol) and have been seizure free for over 7 years.  I still have brief episodes/auras but they only last 5-10 seconds.  That is enough to scare me into staying on the drug therapy.

The only encouragement I might be able to give you is that I was under a lot of job related stress AND had sleep apnea when the seizures re-appeared.  Maybe if I had taken it easy and had gotten a CPAP machine earlier, the seizures might not have ever reappeared...   I'll never know.

Doug

 

Re: Controlling seizures without medication

Wow, all these comments are great. I think I will talk to my neuro about this, even thought I'm pretty sure the answer will be no, but who knows, maybe he knows something out there

All the best, Christine

Re: Controlling seizures without medication

We are trying this right now with my 18 yo son, who has had epilepsy since he was 15 months old (grand mal and partial seizures).  Josh has had a couple of periods of time in his life when he was totally seizure free (without medications) for 2-2 1/2 years.  We got concerned when they started again when he was 10 yo, and we started medications.  He always seemed to be anxious on the medicines (and really dopey on some), and none of them controlled his seizures for any length of time except clonazepam.  But, he developed a tolerance to clonazepam, and it was a very long wean from that med.  He ended up on zonegran to try to get him off clonazepam, but that didn't control the seizures either.  So, he just completed the zonegran wean about 4 weeks ago, and we're trying to get the seizures under control without medication.  He really isn't any worse off than he was, but is having a couple of grand mals and a few anxiety attacks per week.

Our chiropractor has put him on a number of supplements to help with anxiety (and hopefully seizures).  I don't know if they do anything or not, but I'll keep him on them until we get past all this.  He's on inositol, cataplex G, and min-tran put out by Standard Process.  All of these are sold through health care professionals only.  The chiropractor used to be a pharmacist, so we've learned alot working with him and our neurologist (who is very good, but openly admits he doesn't have all the answers for cases like this).  One thing to keep in mind is that seizures can happen BECAUSE of medication adjustments, especially coming off a seizure medicine.  So don't assume that if you're weaning off something and still having seizures, that it's your condition.  It could be the process itself.  Another thing to keep in mind is that many seizure medicines are stored in the fat tissues, so it can be 4-6 plus weeks after coming off before your body is clear of the meds.

I'll keep you posted as to how this all works for him.  I think nutrition and stress levels are key things to watch, but it's been difficult for him to find a middle-ground (teenaged boy, doesn't want to eat totally healthily).  I have decided as others on this forum have said, that we need to keep trying things until we find something that works.  Josh was a "guinea pig" on meds, he's a "guinea pig" off meds.  But at least he doesn't have the side effects he was experiencing before!

Re: Controlling seizures without medication

Hi, My name is Jenni and I live in the uk. I was diagnosed epileptic 5 years after having a middle cerebellum anurysm clipped. My fitting or fizzing as I prefer to call it went on in the background. For three years I successfully lived without medication despite having pressure put on me to start taking Keppra just by drinking a lot of water, doing meditation to lower stress levels and getting a lot of sleep.I have never, touch wood, had a grand mal and my type of seizures were diagnosed as complex focal, I would usually just feel really stressed and lose control of thought for seconds to a minute or so and then just have the feeling of my brain being squeezed for a few hours. Since recently having a posy-ictal automatism, where I went for a walkabout but managed to get home safely, I have agreed to start keppra. Though not comfortable with the idea I am willing to try as I accept that my tiredness may have been due to the 'fizzing' and if I can control that my quality of life may improve. Ideally I would like to keep the dosage as low as possible but the way they decide dosage here seems to be that they take you up to high - 2000mg a day- and then and only then start monitoring your blood to reach a lower acceptable level.

Re: Controlling seizures without medication

Well, my brother-in-law started having seizures in teens. He quit taking medication and tried to control his seizures through eliminating stress and better diet.

How did it go? Well, he can't tell you because he died from a seizure. Christmas Eve 1994 his room-mate went to check why he wasn't up for work and found my brother-in-law dead in his bed.

Merry Christmas, eh?

You've got nothing to lose--except your life. 

 

Re: Controlling seizures without medication

when life gives you lemons... smell an orange

 

i was diagnosed with juvenile abscence epilepsy when i was 11 years old and am not almost 25. i've been on valproic acid, tegretol and topomax in the past 14 years. 

over the last four years i was taking tegretol and topomax. i kept on having seizures... it actually progressed from abscence seizures to GM and simple partials. i kept on getting increase after increase after increase until i couldn't go any higher on either med. it was at that point where i said something has got to give. i would tell my neuro that i was doing fine but still get increased. so i stopped taking my meds all together.

that was over one year ago and since then i have had only one seizure while i was sleeping. i have been doing great. i have been feeling clear headed and not walking around with a perpetual aura 24 hours a day.

though i do not recommend doing something so rash as stopping your meds it has worked for me. i know when i get too tired it is a trigger so i make sure that i get plenty of rest and try to keep my stress at a minimum. and thus far it has been working for me.

Re: Controlling seizures without medication

Is it possible to control (some) seizures without medication?  That is a valid question (my view).  I suspect that if one looks at enough of persons (like millions of them), here and there it's very likely that a few persons - here and there - with certain limited types of seizures can control them (up to a point) without medication.  At the same time, am very aware of several books written by persons with neurological challenges - one wrote a book about epilepsy and how Dilantin was helpful (not a cure) to the author;  another wrote a book about ADHD Inattentive (hyperactivity) and how the old medicine, coffee/caffeine (NoDoz / Tirend - 100 mg) surprisingly reduced (not a cure) ADHD symptoms a little.  In both cases the authors were shocked that FDA approved medicines could (favorably) affect the brain/mind at all and the books were outcomes of that realization that, for some persons, the right FDA approved medicine actually works a little.  Best wishes.

Re: Controlling seizures without medication

hi,

i have had seizures since i have been a teen, i have been on tegretol, topiamate, lamectal, but the last 2 are for mood moderators, i have also learned that i have bipolar disorder.  thru all of this, i have learned that Gabba has helped me tremendously!! 

when i first got on tegretol they put me on it 7 {200 mg} a day! along with 3 dialantins a day, they didn't know what was wrong with me, i had to figure which one i had!! LOL  a school project!  **grin**  but over the years i had slowly pulled myself off of pills,  i noticed that when i was over medicated i twitched more,  on "monthlys" i have more problems {i take 1 more tegretol til its over} and i have no problems. 

now i have started a brand new regimend. i have started taking gabba complex.   i take 3 pills morning and 3 night,  that takes place of tegretol, and i take topiamate. i now have no problems except for the tingling sensation still, but no headaches like i used too.  

if you want to find out if you can control them w/o meds, what i did, is i took 1 pill away {in retrospect i would have done it 1/2} for a week, if it works and you do good, then  you can go to the next one, most of the time i waited for 2 weeks,  and that was only because if something bad happend it always did on the 3rd day for me.  

the next thing, eating is very important, you need to find foods that are high in gabba.  google them.  they are mostly the dark vegies if i remember right.  also leaving out the fatty foods and dairy as much as possible. 

then, excersize, walking as much as possible, or what ever, just make sure that you are doing something to make your pulse come up!!  don't over do it,  this helped "tire out" the extra energy  in that causes the seizures, i don't know how to explaine it other than that.   if i don't do the excersize then i have problems, if i do then i'm good to go.  when i don't i get these kinda like screechy squeales in what i imagine is little veines in my head and i can feel it too. and i also have really hard jerks and almost drop to the ground. sometimes almost into a seizure. sooo, i am very careful about the "excersize".   

I hope that any of this is useful to you! my hubs freaks when i mess with my meds, but i tell you, i dislike being on medicine!  LOL  and i know that i can find a way to treat it with food and mood modification, BUT...LOL {we have the worrying hubs!  **grin**}

sooo still searching! :'}   good luck and i hope you find your answer!

Re: Controlling seizures without medication

Hi all, well i have read the comments, and i too have epilepsy
(controlled) And would like to offer my experiences with you to
hopefully help. I was born with it and had grand mal siezures until 1977
when my meds changed for the fifth time, and the things that remained
the same was the depressive feelings, lack of short term memory, a
feeling of lack of self worth, inc pre-conceived ideas of what people
thought about me and in some cases i was right.. And it wasn't til the
90's that things started to improve, and this is where i want to help,
as to help the people that have epilepsy and their partners to
understand my journey, and hopefully start your own enlightening
journey.. :-)

One of my first lessons was that the good old brain can only make energy
from two sources, sugars or water, and that the good old brain runs a
lot smoother on the hydro-electric power WATER my second lesson was that
the brain is two thirds cholesterol, and i find that a high fat diet
helps ME not everyone, but worth a try then in this Century i had major
leaps in terms of knowledge and it becoming my power.. The following is
imperative for you to take on board in order to make significant
progress.. YOUR DOCTOR  does not understand nutrition like you hope he
does, this i got educated on, also i read the side effects related to my
meds, and also googled the ingredients MSDS reports for information.
One time my doctor changed my meds and i nearly had a seizeure the next
thing i did was read the side effects guess what one of the side effects
was...... oh SIEZEURES umm 

The next one was an eye opener, now if your one that likes FRUIT and
still has seizures, Citrus fruits are natures CLEANERS and looks after
your insides, but the bit that's the killer is that my meds are not
natural to my body, so the fruits were cleaning out the meds, making
them less effective, so since i stopped the citrus fruits i feel
better.. :-) 

Another side effect was that my meds absorbed BLOOD CALCIUM and i
learned without Calcium or sufficient quantities leading to weak
muscles, so i rectified that one too by upping my calcium intake with
high quality supplementation, my short term memory was effected too,
again education and action.

I feel that there are a lot of people
suffering, due to what i call TOTAL DOCTOR DEPENDANCY. and no other idea
of where to start. what ended up being my solution was GETTING EDUCATED
cos you can't leave it to your doctor. Find out what works best for
you then go with it. and don't be afraid to tell ya doctor HE'S WRONG if
that's how you feel

I really hope that this post helps people like i have been helped
through education, this has made, as i don't fear fits, mo memory
issues, no weak muscle issues, no depression issues, HOW because i got
educated FOR ME now i am trying to share my experience to help others,
doing things differently might work for you but trial and error is the
key, and when your on the right track, keep going...Personally i find
for me and med it's a blend of meds, nutrition, supplementation, and to some
part an un-healthy diet,  this allows me to be siezure free and be able
to work aswel. That's my trade off and my doctor and practice nurse
don't understand this, they think it's my excuse for the weight problem i
have. But when i asked them if i change my routine to theirs and i have
seizures will you PAY MY BILLS guess what the answer was CLUE it wasn't
yes. Also this blend has allowed me to reduce my MEDS NOT FREE OF
THEM. for me i find some of the best foods are eggs and butter, but as i
have read others find avoiding these types of food helps. Although here
we are sharing information on what works for us, while letting others
see, there are different ways that work it's, an individual thing and
finding what works for you innit

QUOTE... All success is 99% failure. And getting it right ONCE 1%  :-)

Greg UK

Re: Controlling seizures without medication

Thank you for sharing this information- I will try eating eggs for breakfast and a higher fat diet in the mornings, and see if this help me. Conversely sometimes fasting can help too. There are lots of neuro devices coming onto the market-I wil share my experience of these as I am going to a consultant, so I am hoping this improves my condition.

Re: Controlling seizures without medication

Hi Greg

I understand where your comming from. I see doctors when I have a problem I can't deal with which I have been doing for many years. I have epilepsy and I hate taking medications for it. I know they are there to help control the electrical impulses hitting in the brain. I have had seizures for more than 50 years some of those were seizure free. You are right when talking about education and learning what medications can do. Any medication including asperin have side effects. What medications for seizures do is control electrical impulses the same medication can cause electrical impulses in others. A good diet helps but I love my steaks seafood and everything else that I have fixed. I would love to live where I could raise my own veggies but I don't I do go to farmers markets and try and buy fresh veggies that were grown near where I live. I bake my own bread which if not eaten in 3 days goes in the fridge because it does not have all the stuff in it so mold will hit it fast especially in a humid environment.  Some people need to look at old home remedies they would be surprised at what vinegar water an honey can do if it is taken  daily,  I have been able to do alot mentally. What most people do not know is that they only use a very small portion of their brain. Once I was put on meds for my epilepsy I steared away from taking anything else. SOme people need pain killers and I know that because my brothers and sister have had to use them. I have had knee surgery which can hurt bad. The first time I took 1 pain killer I gave the rest of the bottle to the doc. the second time I had it 30 years later I was given a filled RX when leaving the hospital which I took none of. My doctor was working on my hand which I had burned and he stated my blood presure was high and I was to see him in 3 days. I asked him what he wanted my blood presure to be. He said normal would be 120/80 I asked what mine was and it was higher than I wanted it. I told him I would have it down to normal and the next visit it was 120/80. He asked what I had done to get it down I told him the mind is a wonderful thing and people can use theirs to help them.

Doctors know a lot but people do not know that the doctor is part of a team. The patient is the other part of the team. People need to note their seizures and if they think something triggered the seizure note the trigger. the length of time in the seizure should be noted and the time it takes to get back to normal. Giving the doctor that information gives the doctor more information to work with. He has knowledge of medications and procedures that can help many but each persons seizures are different as are the triggers and medications. The more information he has the better he can serve us.

Re: Controlling seizures without medication

Hello everyone - i have read the comments in an effort to understand your experiences.  I am a researcher for a living so I research EVERYTHING...habit.  I have had epilepsy since I was around 12 - the onset of puberty.  At the time I was diagnosed with absence seizures and once they stopped over-medicating me I was completely controlled and not perpetually sleeping.  I have been fortunate in that I lived a seizure free life until I hit 40 (no side-effects, nothing) - I am on Frisium (clobazam).  Then, after a year of begging my neurologist to do something (as I was having absence seizures one day a month - during my cycle) ...wham!  Full on tonic clonic (grand mal) seizures - hospitalization and medication jacked up as high as they could.  I quickly put a stop to the Epival as I gained a ridiculous amount of weight on it and so they just upped my existing Frisium.

A couple things I have learned since then.  EVERYONE has a seizure threshold.  Literally, everyone on the planet could have a seizure given the right conditions in your brain.  Second, the threshold is controlled by hormones.  The higher your progesterone, the greater your tolerance.  For men and women.  For women, when they start with "the change" many undergo spikes of estrogen and low levels of progesterone = seizure.

The progesterone always needs to be kept elevated or at normal levels.  I am right now on the pill (which is of course bad for me but my OB/GYN agreed to as long as I'm not a smoker and my neurologist totally disregards its value "you can take it if you want to but it won't do anything".  In fact, I tested  out his theory and within a week off of the pill, I could feel the absence seizures returning (however brief).  Since my absence seizures are now the precursor to a grand mal seizure, I immediately get to a safe place even if nothing happens.

I am currently investigating the possibility of controlling my seizures with a far lower dose of the Frisium (30mg instead of 50mg, no birth control pill but using natural progesterone and bio-identical hormones as a substitute.  I have eaten healthy my whole life so tend not to focus on diet.

 I will keep you posted.   For me - hormones are directly related to how severe (or not) my seizures get.

Here's a tip for you - the next time a dr. prescribes something for you, ask him or her if they know why it works.  Then, go ask a pharmacist.  I have yet to find a neurologist that understands why or how any of the drugs they are prescribing work...save one.  Dr. Blume.  I haven't found a good neurologist since he retired.

 

 

Re: Controlling seizures without medication

Hello,

I am in a situation. I also found out that progesterone controlled my seizures when I gave up drugs when I was pregnant. I, too am embarking on a journey, and I would be very interested to hear from you.

 

I have waking epilepsy, and I think similar epilepsy to you. I have the progesterone coil, unfortunately after a time I feel it starts to be less effective. I don't take drugs, but ocassionally I do have the odd fit, when my progesterone level drops off.

I have just done some research into neurofeedback particularly something called LENS. Recent research is very promising and there is hope of more devices coming onto the market, especially a device which stimulates the trigennimal nerve (don't think I've spelt that correctly) whilst your asleep. It has yet to come onto the market though-LENS treatment is quite expensive but I'm wililing to give it go and it has a good statistical rate of helping people. I will write on this forum about my experiences. I am interested. Where do you get natural progesterone from? Also the hydro-electric water, could someone give me information on that please? I originally was on epilim, which basically make me into a zombie, however, I wish to get better control over my fits (waking and progesterone related too). I would be very interested to hear form anyone participating on this forum, and I will also write about my experiences too.

Thanks

Re: Controlling seizures without medication

How was the past year?? I am curious if the pill worked. Which one did you try?
I came to the same conclusion, that my seizures/migraines must be hormonal. It was obvious to me, but I needed to switch neuros to have a doctor agree with me!
Now I need a Gynecologist that will work with us...

Re: Controlling seizures without medication

I don't think that you can control seizures through the power of positive thinking.  I do think that relaxaztion techniques could help so can getting good sleep on a regular schedule, eating right, etc.  I suggest that you look into the ketagenic diet or modified Atkins diet if you want to try something.  Many people have success with one or the other of these but they would be a commitment for life that you don't "cheat" on and, for safety, you must be under a doctor's supervision with liver panels every 3 to 6 months and urine testing on a daily basis [requires you to hold a "pee stick" in your urine stream once a day. 

Re: Controlling seizures without medication

I think it depends on your situation. My seizures were relatively rare in the first place (approx 1.5 years apart, 6 in 9 years) so it took a while for me collect "data" on them. But what I have learned us this:
1) I get very strong feelings that I might get one, and now I know what those feelings are. Getting those feeling didn't always end In a seizure for me.
2) thanks to years of tracking my period In a spreadsheet, I was able to enter my data in an app that predicted ovulation times, and it turned out that every single one of my half dozen seizures or auras occurred during ovulation.
3) every single one occurred After a night of drinking of poor sleep (either too much or too little)

So after reviewing all the conditions that mine require for my seizures to occur (bad sleep plus ovulation) combined with my commitment to tracking my cycle and taking strict precautions during my ovulation times, my doctor has left me with atavan to use in case I get a "feeling" that one may start. I take the atavan, lie down for a couple hours, and I'm good.

Seizure free for 3 years and planning for many more. Menopause might change things a bit though so I will have to check in with the neuro again when I hit that point.

Re: Controlling seizures without medication

My daughter has epilepsy but after investigating the side-effects of various medications, we decided not to use medication. Instead we opted for a "calmodulin" based supplement. Initially she used to have a "gran mal" 1~2 times per month, but after taking the supplement, she is now in the 3rd month and did not experience a "gran mal" as of today.

Re: Controlling seizures without medication

I know where you are comming from. I also know that a seizure is an electrical impulse hitting th brain wrong causing a chain reaction. If yoou think you can control all the electrical impulses hitting in your brain go for it.

What you need to think about is what can be triggering your seizures. You stated you watch out  for foods and stress. Good many different things can trigger seizures. I watch what I eat and try to not get stressed out. Stress can trigger my seizures. Getting too hot too fast can also trigger seizures in epileptics. Been there done that.

simple seizures are not long at all mine last split seconds and I'm back to normal in less than a minute. Complex focal I am not fomiliar with. Complex partial I am. Those can be longer.  If you neuro calle them FOCAL then I may know what he is talking about.

I had Grand Mal, Focol motor and pettit mal seizures but those terms were back in 1963 and used for many years. A focal motor seizure starts in one area of the body and moves. Those seizures can become convulsive. In those seizures I could see hear and understand everything going on around me I just couldn't control anything. They can  look like grand mal seizures. They are tiring.

The mind can and does many things. I have controlled my blood presure using it. All I need to know is where the doctor wwants it and I can get it down. Kind of like having knee surgery and not taking any pain pills. I block out pain because I do not want any medications enterferring with the meds I take to control my seizures.

I hope you get the answers you need but pease do not get off your meds without your doctor telling you to.

The medications you are taking are to keep the electrical impulses hitting wrong and make them hit right.